The SSA does not automatically approve disability claims based on a diagnosis of Ehlers-Danlos Syndrome (EDS), but qualification is possible. EDS is a group of connective tissue disorders causing a wide range of symptoms that can severely limit a person’s ability to work. Eligibility hinges entirely on the severity of the individual’s functional limitations, meaning the documented impact on daily life and work-related activities is far more important than the diagnosis itself. Successful claims require comprehensive medical evidence demonstrating that the symptoms prevent the claimant from engaging in substantial gainful activity for at least 12 months.
Understanding EDS and Functional Impairment
EDS symptoms are often systemic and unpredictable, making them highly disruptive to work capacity. A primary feature is joint hypermobility and instability, leading to chronic pain, frequent dislocations, and subluxations that severely restrict physical movement. This instability can make basic work tasks, such as sitting, standing, lifting, or repetitive motions, impossible to sustain over an eight-hour workday.
Many individuals with EDS experience co-occurring conditions, which multiply functional limitations. Postural Orthotic Tachycardia Syndrome (POTS) can cause dizziness, lightheadedness, and severe fatigue that prevents sustained concentration or physical exertion. Chronic fatigue and “brain fog” impair cognitive functions like memory and the ability to stay on task.
The SSA does not have a specific listing for EDS in its official “Blue Book” of impairments. Evaluation often occurs under multiple categories, such as musculoskeletal disorders, cardiovascular, or immunological problems. The determination focuses on the claimant’s residual functional capacity (RFC), which is the maximum work a person can perform despite their limitations.
Types of Federal Disability Benefits
The SSA administers two primary disability programs: Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). Although both programs use the same medical criteria to determine disability, their financial and work history requirements are distinct.
SSDI is an insurance program funded by payroll taxes, dependent on a person’s prior work history. Applicants must have accumulated sufficient work credits, which is generally five years of work out of the last ten. The benefit amount is calculated based on the worker’s average lifetime earnings.
SSI is a needs-based program for disabled individuals with limited income and resources, funded by general tax revenues. Since SSI is not based on work history, it is available to people who have never worked or have not earned enough work credits to qualify for SSDI. Both programs require the applicant to meet the SSA’s strict definition of disability, meaning the inability to engage in substantial gainful activity due to a medically determinable impairment.
The Application and Medical Evidence Requirements
The application process can be initiated online, by phone, or in person at a local SSA office, but the focus must be on providing comprehensive medical evidence. Since EDS symptoms can be fluctuating and often invisible, the documentation must clearly demonstrate the condition’s impact on work-related functions. This evidence should span years and include detailed medical records from all treating providers, including specialists.
The treating physician’s statement must go beyond a simple diagnosis to detail specific, measurable functional restrictions. For example, the physician should specify that the claimant can only sit for 30 minutes at a time, lift no more than five pounds, or is regularly off-task due to pain or fatigue. Objective findings, such as imaging results, physical therapy notes, and documentation of co-morbid conditions like POTS, strengthen the claim.
Applicants should maintain a consistent record of treatment and document all attempts to comply with prescribed therapies, as failure to follow treatment without a valid reason can lead to a denial. A Functional Capacity Evaluation (FCE), which objectively measures a person’s ability to perform physical tasks, provides powerful evidence of limitations. The strongest applications connect the clinical findings with a clear, longitudinal history of how the impairments prevent basic work activities.
Navigating Denials and the Appeals Process
The initial denial rate for federal disability claims is high, but this first decision is not the end of the process. The SSA has a multi-level appeals structure that begins when the claimant files a Request for Reconsideration within 60 days. During this stage, the claim is reviewed by a new examiner along with any new medical evidence submitted.
If the reconsideration is also denied, the next step is requesting a Hearing before an Administrative Law Judge (ALJ), the best opportunity for a favorable decision. The ALJ hearing allows the claimant to testify in person about the daily impact of their EDS symptoms and present new evidence directly to a judge. Claimants frequently find it highly beneficial to secure legal representation, such as a disability attorney, before this hearing to prepare the case and advocate effectively.
Following an unfavorable ALJ decision, the claimant can appeal to the Appeals Council, which reviews the case for legal or procedural errors. The Appeals Council does not hold a new hearing and approves a small percentage of cases, but this step is required before moving to the final level. The final step is filing a civil lawsuit in Federal District Court.